Why am I feeling alright?

[Vitesse]

My husband was diagnosed with AD in late 2015 and we had no real idea what was facing us. I thought he would just lose his memory!! Little did I know what I would have to cope with as his sole carer. He was 20 years older than me. By 2021 he was non verbal, incontinent and not understanding much of what was happening around him. I avoided Respite care because I felt that he was familiar with his normal surroundings and I wanted him to be at home until the end. I was here 24 hours a day for him.

On the night of November 30th, he was having a tantrum and somehow, we both fell while I was trying to hold on to him. He was not hurt, but I broke my hip. I was hospitalised for 2 weeks and had a hip replacemen. Because he couldn’t be left, he came to the hospital with us, was admitted and stayed there for 12 days and then transferred to a nursing home for 3 weeks. When I was discharged, trying to learn to walk again, his PA took me to visit him. I was horrified. He’d walked into the ambulance on the night of the accident, he’d been left in bed at the hospital, and for the week at the home, and he was now unable to stand on his own two feet. The home was not good, and we set about trying to find an alternative. However, during the next two weeks he deteriorated quickly, and on January 3rd he passed away.

i think he felt that I had abandoned him, and gave up. Others say, I’m wrong, but I can’t be convinced. I know I had no alternative to the stay in the nursing home, but the guilt will always be there.
Other than that, however, I am not terribly guilt ridden or even tearful. The funeral was this week, and I was relaxed about it. It was an afternoon he would have liked. Obviously, his favourite music, many friends and neighbours and an afternoon tea with sandwiches and cream cakes, his favourites.
Its almost as if I’m on the outside, looking in. I’ve hardly shed tears, and my main anger has been directed at his son who lived abroad, came to the funeral, but has done little or nothing to help me over the last few difficult years.
I'm reading that other people are so emotional after losing their loved ones, but I am just carrying on with life. It feels wrong!! I talk to him every morning and ask him how we got into this mess!!

 

[Grannie G]

Its almost as if I’m on the outside, looking in.

Hello @Vitesse

Perhaps this is your protection, your way of managing your loss.

The fact it doesn`t seem to follow an expected pattern means nothing. It is obvious you are reflecting on everything that happened leading up to your husband`s death, dealing with guilt, internalising happenings. This is grief.

You may think you are feeling all right but you are not all right really, you just think you are.

Just allow yourself to be, without question. Be kind to yourself. You have a long road ahead.

 

[canary]

Hi @Vitesse
Please do not worry about how you are feeling at the moment. Everyone grieves at their own pace and that will be right for you. You are still at the numb stage - the feelings will return in their own time
Be gentle with yorself



PS - I doubt that your husband will have felt abandoned, people with dementia lose their sense of time, so he would have been unaware of how long he had been there. Im wondering if it was the fall that did it even though he seemed unhurt. Im sure I read a report that said that 50% of people over 75yrs old who have a fall pass away within 6 months, although I cannot now find it. Certainly both my mum and my MIL passed away within weeks of a bad fall.

 

[Jaded'n'faded]

I imagine the fact that your husband was 20 years older and he'd had dementia for several years meant you'd already come to terms with what the outcome was going to be. You've actually been grieving for years and his death, the funeral, etc, has become part of the process.

I also think there's a 'nothing has changed' element. I visited my mum weekly in her care home for 3 years (twice a week for the first year!) By the time she died, we had already sold her house and put all her affairs in order, she had a pre-paid funeral plan so there was nothing to arrange for that and afterwards I found myself thinking, 'What has changed?' I just didn't feel much different from the weeks before, apart from a feeling of relief that mum was no longer suffering the horrors of dementia. But for me personally, the only thing that had actually changed was that my visits to see a vacant person once a week had ceased. We'd already come to terms with the fact that mum was gone.

Be kind to yourself. Make allowances. There is no right or wrong way to grieve.

 

[Ali_EM]

HI @Vitesse

My father passed on Tuesday and my family have all shown quite a different reaction to his passing, he also was cared for at home until the final hospitalisation that led to his passing. My brother who during his illness, always was the most emotional seems fine and even went to the gym and got a haircut today. My mum occasionally is crying and wants to remove all photos from the last 2 years where he was in a condition like your late husband. I who appeared less affected by his illness out of all of us, have probably cried the most since his death.

I guess we all grieve differently, and @Jaded'n'faded makes an excellent point in that our grief started long before the moment of passing. Also I don't think it's wrong to feel an element of relief when you realise you are now relinquished from the incredibly stressful duties of caring for a dementia patient at home.

I hope you find peace from the knowledge that you cared for him so brilliantly throughout his illness.

 

[Banjomansmate]

A friend coped with caring for her mother with cancer and after she died found it difficult to cry or show emotion until months afterwards when, she told me, one night she couldn’t sleep and went downstairs to make herself a drink and then the floodgates burst and she sat there and cried her heart out.
Grief affects us all in different ways and we each have to work our own way through it depending on how it hits us. We cannot all be like Queen Victoria and shut ourselves away for years, we have to cope and get on with life, as HM The Queen has shown after the death of Prince Philip.
We are sad for ourselves that we have lost someone from our lives who we cared for deeply but equally we can be thankful that their suffering is over.

 

[CAL Y]

Hello @Vitesse . Parts of your post could have been written by me. I have complete empathy with you.
It is only 3 months since my husband died and apart from the first couple of weeks, when I was feeling heartbroken and howling with grief some days, I’m now feeling very relaxed and…dare I say… happier that I have in the last few years.
I’m finally starting to recuperate from the constant tiredness and stress and I am re discovering my old cheerful gregarious self.
Its incredible just how we become different people when having to care for a PWD.
I think that his funeral set me on the way to recovery too.
The wake was in our local pub with all our friends from there, as well as family of course.
It started at midday and my sister, brother in law and myself were the last to leave at about 10p.m. It was a celebration which my husband would have loved.

You also have my sympathy when it comes to your dealings with your husbands son.
I had the same thing with MH daughters. Absolutely no help. I was very glad to cut off contact with them.
I hope that you can carry on feeling as you do. Goodness knows we have been through enough trauma and grief already.
My very best wishes to you.

 

[MartinWL]

My mother died in November at 93 in a care home with very poor quality of life. She wanted to die, she had said so and was not irrational given her disabilities. She had been in decline for a couple of years or so. I was expecting her death as all the signs were present and her GP was expecting it too. Like others it came as a mixed event, sadness obviously but relief that she didn't have to live like that any longer. I do not do emotional, and I find it hard to empathise with my father who wallows in grief. I sometimes feel a bit guilty on that front, because of the contrast between his despair and my unemotional acceptance of the inevitable. I think it is right that when an elderly loved one is no longer the person they were you don't get a sudden shock but are already prepared when the time comes.

 

[MaNaAk]

My mother died in November at 93 in a care home with very poor quality of life. She wanted to die, she had said so and was not irrational given her disabilities. She had been in decline for a couple of years or so. I was expecting her death as all the signs were present and her GP was expecting it too. Like others it came as a mixed event, sadness obviously but relief that she didn't have to live like that any longer. I do not do emotional, and I find it hard to empathise with my father who wallows in grief. I sometimes feel a bit guilty on that front, because of the contrast between his despair and my unemotional acceptance of the inevitable. I think it is right that when an elderly loved one is no longer the person they were you don't get a sudden shock but are already prepared when the time comes.

I found that you start the grieving process before diagnosis.

MaNaAk

 

[Roseric]

I have reas this too canary and like your self mum passed a few weeks after a suspected fracture x

Hi @Vitesse
Please do not worry about how you are feeling at the moment. Everyone grieves at their own pace and that will be right for you. You are still at the numb stage - the feelings will return in their own time
Be gentle with yorself



PS - I doubt that your husband will have felt abandoned, people with dementia lose their sense of time, so he would have been unaware of how long he had been there. Im wondering if it was the fall that did it even though he seemed unhurt. Im sure I read a report that said that 50% of people over 75yrs old who have a fall pass away within 6 months, although I cannot now find it. Certainly both my mum and my MIL passed away within weeks of a bad fall.

 

[DennyD]

My husband was diagnosed with AD in late 2015 and we had no real idea what was facing us. I thought he would just lose his memory!! Little did I know what I would have to cope with as his sole carer. He was 20 years older than me. By 2021 he was non verbal, incontinent and not understanding much of what was happening around him. I avoided Respite care because I felt that he was familiar with his normal surroundings and I wanted him to be at home until the end. I was here 24 hours a day for him.

On the night of November 30th, he was having a tantrum and somehow, we both fell while I was trying to hold on to him. He was not hurt, but I broke my hip. I was hospitalised for 2 weeks and had a hip replacemen. Because he couldn’t be left, he came to the hospital with us, was admitted and stayed there for 12 days and then transferred to a nursing home for 3 weeks. When I was discharged, trying to learn to walk again, his PA took me to visit him. I was horrified. He’d walked into the ambulance on the night of the accident, he’d been left in bed at the hospital, and for the week at the home, and he was now unable to stand on his own two feet. The home was not good, and we set about trying to find an alternative. However, during the next two weeks he deteriorated quickly, and on January 3rd he passed away.

i think he felt that I had abandoned him, and gave up. Others say, I’m wrong, but I can’t be convinced. I know I had no alternative to the stay in the nursing home, but the guilt will always be there.
Other than that, however, I am not terribly guilt ridden or even tearful. The funeral was this week, and I was relaxed about it. It was an afternoon he would have liked. Obviously, his favourite music, many friends and neighbours and an afternoon tea with sandwiches and cream cakes, his favourites.
Its almost as if I’m on the outside, looking in. I’ve hardly shed tears, and my main anger has been directed at his son who lived abroad, came to the funeral, but has done little or nothing to help me over the last few difficult years.
I'm reading that other people are so emotional after losing their loved ones, but I am just carrying on with life. It feels wrong!! I talk to him every morning and ask him how we got into this mess!!

@Vitesse I was drawn to your post. Our journey took a similar path to yours. My husband was 17 years older, also diagnosed in 2015. We muddled on until about 18 months ago when it went downhill fast. I’ve never been a ‘natural carer’. He also had a fall which led to a hospital admission within 10 days he was gone. I do believe he gave up, like you others tell me he was not aware what was happening, living in the moment etc. I also am not convinced. I strongly believe he did not want to go on and wanted this misery to end, especially in those last moments holding him before he passed. This was last November. Initially I felt numb and got on with the practical arrangements, went back to work 3 weeks later, went about my daily business. I started to doubt myself – am I OK, how should I be feeling, how do you express you are grieving? It is only now I feel that I lost my husband as he was, before the Alzheimer’s, and I feel in agony. Like you, I talk to my husband every day. He used to look at me and say ‘I’m worried about you’, I now tell ‘I’m OK’ and hope he hears me as I don't want him to continue worrying! So I guess our experiences are simply one of many.